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Reviews for American Porphyria Foundation

I am dismayed by the fact there seems to be so much negativity surrounding this foundation. The disease is bad enough that one should not undermine the groups trying to support our mutual cause. I see a lot of complaints about getting a diagnosis. The APF was very clear on the process and tests necessary to get diagnosed. I spent a lot of time and money in the process but getting a reputable diagnosis was very important to me . . . Plus I wanted to know what I actually had. The foundation has worked to increase testing accuracy, identify good labs and support genetic research. The advice on the website is clear and despite a cost (usually under $500) you can find out if you have the disease or not. I read the reviews and saw complaints about the cost of diagnosis. Think about the time you miss from work, unproductive doctor visits and the sheer mental effort wasted to complain instead of advocating for yourself or loved ones. Direct you anger and efforts toward something positive. No other foundation or group representing the porphyrias has the technical information, international contacts, political contacts and resources necessary to advocate for patients effectively. I am thankful everyday for the medical professionals I worked to assemble for my care and the APF for helping me through the process. I cannot speak to the effectiveness of their Facebook site . . . If someone is looking for information concerning their health on a social media site rather than looking at the literature on the APF site and consulting with your medical professionals about your specific case--let's just say that mass media is not the forum where I want to get my medical information. As far as I am concerned this is a solid organization trying to help as many people as they can.

I've personally experienced the results of this organization in...

i received help from porphyria experts (after I worked to get a diagnosis) and appreciate the lobbying efforts of the organization to ensure patients continue to have access to drugs and treatment.

If I had to make changes to this organization, I would...

I would like to see more local area involvement (large metro areas) for patient support . . . More story sharing and community building. However, I understand this is a rare disease and the population may not be sufficient to create such groups. Also, there is a lot of confusion between those who feel like they have porphyria and those of us with a confirmed diagnosis.

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

The APF is an outstanding organization. When I needed , they were on the spot. They returned my call promptly and sent copious information to me and my doctor. I live on a small income and told them that I could not donate. They placed me on the member list anyway and have NEVER asked me for money, though I wish I could help.

My doctor was very impressed with the informative material he received from the APF. It was a large packet that arrived only a few days after my request. He also called one of the specialists whose name he said he recognized and was surprised that the doctor spoke with him about my case.

Also, the staff at the foundation were lovely and remember me when I call. I give them a gold star for education and patient support.
Jane A

When was your last experience with this nonprofit?

One of the most important things the APF does is the fundraising it does to provide younger doctors with the opportunities and training to become the next porphyria specialists. Grants can be difficult to obtain in regards to rare disease-- especially when it comes to developing and advocating new techniques to treat these diseases. The American Porphyria Foundation's "Protect Our Future" program is in charge of making sure that in the future there will always be available porphyria specialists, hopefully across the country and in the world. And of course, the best thing they do is inform the public about what the disease is and how to talk to your medical professional about it-- including pamphlets, ER information packets, and a wide range of information to be disseminate. If you trace this disease's publicity, much of the work in understanding it comes straight from the work individuals within the APF do to promote awareness.

When was your last experience with this nonprofit?

Frist to start off with~~ the reviews from AMY and ROB well they work for APF so I really don't need to say anymore on that!! For 30 years of (getting awareness out) You will find it hard to find a hospital that has any info on Porphyria and just ask ANY doctor you come across they will look at you like you have 2 heads... My point is that ALL the money going into APF for 30 years you would think that the hospitals would have got info from them. They have not... Everyone needs to do there homework and find out for there self about this foundition....

When was your last experience with this nonprofit?

I would like to say that Porphyria has been in the family for many generations, and long ago there was no help no DX and no knowledge of this horrific diseasae. The American Porphyria Foundation has helped me and upwards of 43 possible carriers just in my family. I have received medical help, referrals, testing, financial assistance and the best part, I have received Panhematin to help control and manage my disease. I could not have done this without the APF it has helped many members with there own Porphyria and I have learned so much and I have a voice that I can share fell welcomed and supported by this non-profit group. Porphyria is very rare an Orphan Disease sometimes you have to fight to get help and the APF has continued to show support, enroll me in programs such as short and long term Porhyria studies and so much more.

When was your last experience with this nonprofit?

The American Porphyria Foundation is primarily a Research organization. They appear to be singularly involved with fundraising and organization for porphyria research, and with participation in clinical trials. At this time, according to information on their website and persons associated with the APF, the APF provides no direct patient support. That would include any of the following areas: Diagnosis cost assistance, Medication cost assistance, Primary physician referrals, Home Care guidelines or referrals, Patient Advocate registry, guidelines or referrals, Care-giver support, Family support, or Patient support. The volunteers of the APF do operate a few forums on social media sites, yet family members and some patients feel unwelcomed in these groups.

When was your last experience with this nonprofit?

The American Porphyria Foundation is one of the few Advocates for those living with the Rare Condition Porphyria. They work tirelessly on the behalf of Porphyria patients. They have a great reputation with the FDA, Congress and the Medical Community. All there information is reviewed by Doctors and Researchers that are considered to be among the best in their field. 30 years as an Organization. They are Incredible.